Modern environmental factors

Where did you get that figure from?

 

I admittedly didn't do much digging to verify it, but this video posted by World ME Alliance a few days ago which says there are an estimated 55 million pwME:

https://twitter.com/user/status/1789551173105553447


Though their own website says more like half that number.

 

I can't say that it wasn't just masking, but it seems unlikely. I had those temporary remissions from at least 3 different chemicals (prednisone, cuminaldehyde, and T2 (3-5 diiodothyronine). I think it's extremely unlikely that those three chemicals could have exactly the same masking effect. It seems more likely that they're switching something off in ME's mechanism. If ME is a feedback loop with multiple factors, these chemicals could affect the loop the same way by adjusting different factors.

 

Yeah, that'd be great if that was reality. There's also the potential for subtypes that are permanently switched on though. I imagine it might be possible that something like a stroke permanently destroying a part of the brain could cause an ME/CFS-like illness.

 

Ah, now I see that. It says "diagnosed rate" on the title and then "with diagnosis" on vertical axis. It's not the best graph I've seen.

 

True, gradual onsets would take more time to the diagnosis. But I thought that 30% was non-viral cases. From MEPedia.com: "85% of patients report a trigger. 72% of ME/CFS patients report that a bacterial or a viral infection was their onset of ME/CFS; 4.5% trauma; 4.5% surgery or childbirth; 2.2% allergic reaction; 1.7% stress or trauma."

So, it appears gradual onset is about 15%, if was equate non-trigger cases as gradual onset.

 

Not necessarily. People with a reasonably well established viral trigger (e.g. a positive EBV test in the months beforehand) may still have a gradual onset.

My own case was more circumstantial, because although I was exposed to EBV via my boyfriend several months before my ME symptoms started to emerge as a pattern, I didn't develop symptoms of glandular fever in the weeks after exposure. There was no routine EBV testing back in the 1970s, so it was only possible to be sure you'd got infected at that time (as opposed to earlier on in childhood) if you had fairly distinctive acute symptoms.

 

@forestglip further thought - check out Gulf War Syndrome* - "weak form of the PON1 gene were nine times more likely to develop GWI. Normally the PON1 gene protects you from low-level nerve gas, but there is a strong form and a weak form of the gene."
So basically:

• common variant genetic studies [GWAS (samples a portion - 10%? - of the whole genome sequence) DecodeME]; or
• rare variant (whole genome sequence - families with more than 1 family member affected & at least 1 severe) genetic studies;

could be a way to identify environmental factors.
Chris Ponting has said that ME is (20?) years behind re genetic studies. @Jonathan Edwards was part of the MRC expert panel which identified GWAS as an option - another thing they identified was sleep studies.

Getting funding has been a big problem - although Jonathan highlighted that there are limited "ways in" i.e. things like GWAS which provide opportunities.

*
https://utswmed.org/medblog/gulf-war-illness-cause/#:~:text=In May 2022, UT Southwestern,War veterans became chronically ill.

 

Super interesting, thanks!

 

One of the things to keep in mind is that genetic study (GWAS) in Alzheimer's originally turned up a gene* which was difficult to interpret - it wasn't clear why the form of the gene related to risk. It is now assumed that gingivitis is the environmental factor i.e. explaining why the gene influences risk.
Guess best to not get to hopeful re DecodeME at this stage - results out within 12 months!
*https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8032519/

 

Environmental factor or comorbid conditions? I haven't read the paper you linked yet, but I don't know if I'd refer to another disease as an environmental factor. Does something in the environment cause gingivitis, and then gingivitis goes on to cause Alzheimer's?

Among the risk factors listed for gingivitis on CDC's website are smoking, poor nutrition, and "medication with oral side effects".

 

Basically the challenge AKA environmental(?) factor is your response to ongoing infection (gingivitis) but the pathogen isn't the discussion - more that you don't have to look for environmental factors -- just let the genes tell you what's going on.
Jonathan posted that the recent big discoveries in medicine came from genetics --- forget how much X--- you're are exposed to --- go look at the genetic clues (hopefully!).

 

Ah, think I should have highlighted that genetics doesn't do "comorbid conditions" i.e. things you accidentally/incidentally have --- it just says what the actual problem is --- its advantage. Word of caution is that not every disease is genetic enough (for GWAS - DecodeME) to work --- results within 12 months!
Sure above is poorly worded!

 

My reply was wrong rather than "poorly worded"
I think genetic studies get around "comorbid conditions" by selecting participants. Nath's [NIH] study [not a genetic study] also comes to mind - comments were made that he removed most people from the study i.e. due to comorbidities. DecodeME haven't released full exclusion criteria but I think they didn't e.g. accept people with thyroid problems (psychosis?).
In my earlier reply I was thinking of cause & consequence - GWAS aims to find the cause rather than the myriad of downstream consequences (disease) --- however, GWAS can help to point to environmental factors as per gingivitis/Alzheimer's.

 

Yeah it'd be very cool if DecodeME gave us any clues like that!

 

Among other things - it took really big studies in Alzheimer's/dementia - like multiples of DecodeME.

 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease, Arron et al, 03 June 2024

Thread

 

Should this paper not have its own thread?

 

It does. A bit hard to notice, but I linked the word "Thread" in my post. I'll add some space so it's more visible.